MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Maureen038's picture
Replies 1
Last reply 2/9/2016 - 7:51pm
Replies by: DZnDef

Hi All,

    My husband has been stage 4 for three and a half years. He has had many treatments and he was almost NED last spring from the Ipi/Nivo trial when he had two new lung nodules. After seeing several top melanoma specialists only one had a novel idea. At Sloan Kettering they are using old chemo drugs that are showing results especially after using a pd1 drug. Bill had two pill doses of DTIC and while he had very good scans, he was in the hospital for 9 days due to neutropenia. After that we found out he had the her-2 mutation which is extremely rare in melanoma. He has had 2 infusions of TDM1 which we have had to pay for out of pocket because it's not FDA approved for melanoma(very, very expensive). We just had his first scans and we are so thrilled that his lung nodules have shrunk and his fluid in his lungs have gone from moderate to mild. We are SO thrilled and feel that you should always keep fighting!!! We know we're not out of the woods, but we feel so happy that we have made progress. Life is so precious and we plan on living each day fully!!!! We wish all of you the best!!


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Replies by: BrianP, Bubbles, nlac26, Mat

Hello everyone! I am curious if anybody out there has been in this clinical trial? I am a Stage 4 patient who completed 4 doses of Ipi ( October 2015 - December 2015) and was not a responder. I did 2 follow up Pet Scans after treatment on Dec 17th and January 28 which showed my main tumor (chest wall) was still growing..and now I have several subcutaneous tumors around my upper torso, but mainly seeming to favor my left side of my body. I have a great melanoma specialist who has been working with my husband and I but is now recommending I move forward with a clinical trial. I shouldn't be surprised at how invasive the pre-testing for a clinical trial is but sometimes it feels overwhelming. I handled the Ipi really, really well with very little side effects besides some minor itching but I always get nervous when it comes to new drugs. This trial includes taking the pills (epacadostat) every day and the infusion of nivolumab every two weeks. Has anyone been through this? Side effects? Reponses to the treatment? We've been going through this for almost a year and I feel like we're starting to grasp at treatments because we keep getting let down every time I have a scan update. Very frustrating but I'm also very determined to WIN! any input would awesome! Many thanks and love! Niki

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DZnDef's picture
Replies 2
Last reply 2/9/2016 - 7:57pm
Replies by: DZnDef, jpg

Hi all,

Can anyone list for me the various brain radiation techniques?  I've seen the following tossed around on this site:  SRS, WBR, Gamma knife, Cyber Knife (am I missing any)?  Are these all different techniques or are some of them just different names for the same technique?  Thanks in advance for your help!

Maggie - Stage IV (lung mets unknown primary) since July 2012

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bajohnson02's picture
Replies 4
Last reply 2/9/2016 - 1:53pm

Hi everyone..

I am 43 year old female, recently diagnosed with malignant melanoma located on top of my foot. It's a place that has been there for about 8 years. I was told by 2 different doctors who just glanced at it that is was nothing to worry about. So, I kinda brushed it off and let it go. In Jan this year I decided I needed to find a new family doctor, I showed it to him during my 1st visit and he thought we should biopsy it to be on the safe side and so that I could put it behind me and not worry about it anymore. The first biopsy was a small piece that came back as severely atypical melanocytic and recommended full biopsy. I went back in a week later to have the full biopsy done and received 6 stitches to close it up. That was on January 27th. I knew when I received a call from my doctor himself instead of one of the office ladies that it must be something serious. He proceeded to tell me that it was melanoma and was referring me to a surgical oncologist. I got a copy of my pathology report.. But, I am not so sure how to understand it. I feel like its been a roller coaster with my emotions since I got the call. I don't know what to expect or what the outcome is going to be.. I am scheduled this Friday with the oncologist for WLE and sentienel lymph node biopsy. From what I have read it won't be until after that is done that they will be able to tell me the stage. I am hoping that someone here can shed some light to what I am looking at, I will share with you some of whats on my path report. 

Superficial spreading

Clark's level 4

Breslow depth 1.4

Vertical growth (tumorigenic) Present

Host response- Brisk

Regression- Absent

Misosis- 1-2mm

Ulceration- Absent

Predominant Cytology- Epithelioid

The comment sections states- 

Multiple sections have been examined

Melanocytic marker shows focal prominent pagetoid dispersion. Cytologic atypia is prmoinent.

Ki67 stain show slightly increased activity.

Wider re-excision with adequate clear margins and staging, along with sentinal lymph node biopsy are recommended.


Any help in understanding what I may be up against would be so much appreciated.. my main concern it how long it has been there that it may have a greater chance of spreading. Thank you so much for any info. God Bless!! 

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Anonymous's picture
Replies 2
Last reply 2/9/2016 - 1:06pm

Hi. I had a non pigmented melanoma Insitu in 2009. Initial punch biopsy returned a finding that it was a Nevis but had no cancer cells. The mole was removed and path determined it to be an ameloritic melanoma in situ. Margins of 5 were taken. I have a new 6 months  non pigmented "growth" approx 6 cm from original site. It looks identical to the original. Pale pink.. I cannot get to see my specialist until Nov (her earliest app accord to receptionist). My question is, can Insitu melanoma  recur near original site? Am I just over worrying?

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amylou2581's picture
Replies 6
Last reply 2/9/2016 - 5:11pm
Replies by: Jubes, Anonymous, JuTMSY4, melj

Hi all, I'm new to this sithe and so far am finding it useful!

My husband, Mick, is considering stopping his pembro treatments due to severe pain and side effects...
Here is his history :
Original diagnosis of melanoma on his scalp, removed 4 times and received radiation (left a very nasty scar)
3 monthly checks with nothing showing for just over 1 year.
April 2014, melanoma discovered on his lungs and liver. Ipilimumab is started quickly. After 3rd treatment Mick's pituitary gland has swollen causing severe headaches and blurry vision. The pituitary gland no longer works so is put on cortisone tablets. 2 weeks later Mick gets colitis and losses 13 kilos. Is then put on massive doses of cortisone which cause major swelling.
Ipilimumab has finished and they put him on pembrolizumab. Soon after he has severe sinusitis for near 6 months. He gets avascular necrosis from long term steroid use and needs a core decompression to his hip.

But now he is in such severe pain through his bones, joints and muscles that he is struggling to walk, shower, sit, stand or do anything!
He currently takes hi doses of jurnista, lyrica, oxynorm and oxycontin but still the pain is unbearable.

Does anyone have any information on what would happen if he was too stop the pembro?

Sorry it's such a long post, but thank you for any responses.

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DZnDef's picture
Replies 4
Last reply 2/9/2016 - 1:35pm
Replies by: DZnDef, jamieth29, khubes

Hi everyone,

Things are moving fast with my brother.  His scans show numerous mets everywhere (easier to list where they aren't) including his brain.  The largest one in his brain is 1.2cm.  He has no symptoms.  The report doesn't list a total count.  He is with Kaiser and they just booked him an appointment to meet with a radiologist Wednesday (two days from now).  He hasn't even met with an oncologist yet (was supposed to be Friday but pushed back to the 23rd).

Anyway, I know individual radiologists have their own way of operating so I thought I would ask first here:  what are the radiology options for brain mets these days?  Pros and cons to each?  Personal experience?  Any and all guidance and information will be much appreciated.

You guys are awesome!

Maggie - Stage IV (lung mets unknown primary) since July 2012

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5dives's picture
Replies 21
Last reply 2/9/2016 - 3:04pm

Hi all,

I am 46, stage 3b, NED since July 2014. I see the derm every 3 mos and onc every 4. I'm treated at Loyola in Chicago. My doc is not one to do scans, so I've only ever had one, in preparation for a second opinion at MSKCC.

My health has been great, but lately I've had several easily dismissable symptoms. My node scar area has been aching (hasn't before), but nobody can feel a swelling. Headaches more than usual, but nothing that would cause concern.

I have had a persistent and irritating cough for 3 weeks. Yesterday I kicked up a fever, went to walk-in care, and was diagnosed with walking pneumonia. No chest x-ray.

In my understanding, many of you who have had lung mets have had no symptoms. I definitely have a fever and a gross cough.

I'm seeing my onc tomorrow (regularly scheduled). Should I be asking for a scan, or should I let it ride? I'm am very aware that this is most likely anxiety on my part.

Best to all of you, 


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scots's picture
Replies 2
Last reply 2/8/2016 - 11:44am
Replies by: scots, MoiraM

I have been told I need to get in Treatment as soon as possible, but where's the sense of urgency on the doctors / hospital part.  If I do not like what I here or they have limited or no options I have to start the whole process over. Contact a new specialist for an appointment go through all the paper to get files and reports and CDs of scans to the next doctor and all the while time is passing through my fingers .  I do not know why it's so hard for one doctor to refer you to another doctor and pass on all the records I spent weeks sending to them.  I know it's all on me but it would be nice to have some help and and cooperation between doctors. I have worked with my oncologist in town who is not a melanoma specialist.. He referred me to a Duke specialist. I'm waiting to hear if I qualify for a trial at Duke. I have also talked to NIH and sent them all my records. They said the TIL treatment is too risky for me. I also have an appointment at MSKCC in two weeks. Now they have all my records. With all that said I'm waiting.......I have liver mets after five years of NED. I have tried ippi and Opdivo but it did not work. I do not have the Brad mutation, I have a mekmutation which I have been told is rare.   I have filled out my profile if you would like to see detailed information on what I have done. I'm great full to a have great place like this to vent and find people in similar situations.




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Please pray for my husband. Was scheduled to start IL2 tomorrow. Was admitted to hospital yesterday and not strong enough for treatment tomorrow. Multiple tumors in neck and various places, but larger ones near stomach and in small intestine have been causing severe pain last month or so and had lost almost 30 lbs since christmas which he didn't need to lose. Admitted due to not being able to eat or drink due to tumors pushing on those organs...

Meeting with surgeon and our melanoma team tomorrow. HaS had 2 small bowel resections in last 6 mos...not sure how many more he can take.

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gregor913's picture
Replies 4
Last reply 2/8/2016 - 8:01pm
Replies by: Brendan, Rocco, MoiraM, Scooby123

I did two infusions of yervoy 10mg. Third is on the 15th. This week my skin seems to be more itchy but there is no rash. Mostly arms, legs, and on the palms of my hands. When you guys had the yervoy itch did you have a rash or just itchy skin. It's very tolerable now. Greg

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DZnDef's picture
Replies 14
Last reply 2/9/2016 - 4:08pm

My brother was just diagnosed Stage IV melanoma and is meeting with an oncologist Friday.  I thought he might appreciate seeing a roll call.  Please let us know when you were diagnosed at stage IV and how you're doing now if you don't mind.

I was Stage IV July 2012 but misdiagnosed until my recurrence January 2014.  Still have active mets but also still here and feeling good.  Anyone else?



Maggie - Stage IV (lung mets unknown primary) since July 2012

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Cynlee's picture
Replies 3
Last reply 2/8/2016 - 7:29pm
Replies by: Cynlee, JuTMSY4, Janner

Ok this may sound stupid but I'm only stage 1a from a spot on the top of my foot. The primary was about and inch or so from my big toe. I've been having pain in the joint and it feels as if the second toe joint is hurting also. It hurts to walk sometimes and at night. I really feel that my mobility is limited in the big toe joint. This has been going on for over two months. What's the chances of such a low stage going to the foot bones?  I should say also the spot on my foot came up from nothing to melanoma in less then 10 months. I thinking maybe I should get an X-ray but I don't want to look paranoid. 

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Scooby123's picture
Replies 9
Last reply 2/8/2016 - 1:26pm
Replies by: Scooby123, Anonymous, MoiraM, Ed Williams, melj, Bubbles

Hi all,

I would like to know if now the combo treatment is available in some country's , if you have had ippi would you not get the combo ipp - nivolumab . We have not approved combo in UK as yet I think September I believe correct me anyone if I am wrong . But was wondering now that combinding treatments is better would you not get it if you had it on its owne. Plus you would have had to respond to the treatment as well otherwise they would be no point giving you together if you have not responded to one. I am not sure how it all works but would love some feedback from anyone who does

love and prayers to all us fighting and our caregivers


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